Hello PMR experts! I’ve been having a very rough ride lately. I think I’m having a PMR flare, but I’ve also got a few other issues to complicate things. I’ve had a lot of stress last winter and this spring (complex eye surgery and moving mom into assisted living). This is further compounded by my doctor, who has never been great at letting me manage my prednisone dose and is now forcing me to reduce my dose by not refilling prescriptions. I’ve had PMR almost 3 years, been on prednisone (frequently on too low a dose) for 28 months, currently taking 4.5 mg. In May I had a nasty case of diverticulitis that I’m mostly over, and my nerve damage in my tail bone has flared also. About the same time I started getting the diverticulitis, my hips (both) started giving my trouble making walking difficult. My doctor has blamed everything on my nerve damage (even the diverticulitis symptoms until an emergency room CT proved otherwise), and is forcing me to get a caudal epidural steroid that I’ve avoided for 10 years because the pain doctors have never been very optimistic about it helping and I’m afraid it could make matters worse. She has cut off my prednisone refills to only 1 month supply at 4.5 mg.
Of course I need a new doctor, but that is difficult in this area, plus I’ve already had terrible luck with a rheumatologist. (I’m looking.) I believe my new hip and thigh pain is tenosynovitis or maybe bursitis, as it feels nothing like the nerve pain I’ve had for 10 years. Or possibly a PMR flare, as my neck and shoulder pain is up, but bearable. I’ve had tenosynovitis in my thumb for over a year and the hip pain feels and acts just like the thumb. I tried taking 10 mg for a couple days, but it didn’t really help much, no miracle like in the beginning. I can’t really do more without my doctor’s help. Is there any imaging that might help discern whether I have tenosynovitis, bursitis, PMR, or just nerve pain from my spine? Will a longer/stronger course of oral prednisone help tenosynovitis or bursitis, or are injections better? Thanks for all opinions and experience!
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I feel so sorry for the stage you are at, I know about these hard decisions about a parent too. It is rotten that your doctor seems so ignorant of the impact major life events has on autoimmune diseases. You cannot be forced to accept a treatment that you don’t want. I get the feeling that you are venting ( so appropriately) and you will fight your corner. Bless you and more strength to you. Do not be pushed around!
Thanks, Jane, for putting up with my long winded moaning. I am frustrated to be back to this stage again, especially since I had asked this doctor if she could treat my PMR, after a similar situation with a rheumatologist who was even more ruthless about prednisone 17 months ago. I probably should have asked my questions without all the excess info. I do want to know so I can ask for tests and treatment that could help, and also avoid treatment that I may not need. Thanks for the moral support.
You are right , you need a new doctor , if they are putting everything down to PMR but then perversely not fulfilling your prescription needs they are negligent in their duties and relying on them could be making matters worse.
I would be equally concerned about the injection especially if the pain team are also not convinced that the treatment is right for you. You definitely need a second opinion on all of your care.
Are you part of a Practice with multiple doctors where you could swap to another partner after making a complaint in house ?
If not , look up your local services on the web to find someone new , I know you are going through and it's the last thing you have the energy to do , but the only way you will get any energy back is by having a GP that works with you , not against you.
Realistically you could have a PMR flare and one of the other two , if it doesn't feel like the nerve damage pain you know , it probably is PMR + ??. The diverticulitis could easily have caused a low level flare and another thing has made it worse.
If you feel that an increase of Pred will help you may have to just go for it , or at least go to an out of hours service and discuss an increase in dose , even if temporarily , with them. The increase to 10mg would probably take more than a couple of days to take effect so I'm sure you were put up increasing longer in case you ran out of medication because of your ignorant doctor.
If the OOH also agree that you should increase more long term you could ask them to include this advice in the letter to your GP , it would give more strength to your request if you feel you need to still use the current horse doctor.
Try and rest and stay as calm as you can and I hope you get some real help soon. Big Electric Hug xx
Thanks for the support. Changing doctors will be difficult, as we don’t have many to choose from, I am looking. My doctor is blaming my trouble on the preexisting nerve damage, not PMR. You are right, the diverticulitis could have spiked my PMR. Doctors also think diverticulitis can inflame spinal nerves. The only way to find out whether PMR is flaring is to do an adequate dose increase and see if it helps. I don’t know if I have bursitis or tenosynovitis, or whether oral steroids are the best treatment for those. I do need a good kick with prednisone to see which part of my new issues are PMR. But I don’t have enough prednisone to do that without the fear of running out in the future. I am trying to lay low and rest, but having trouble getting enough sleep.
I have just checked your previous posts and realised you were fighting your dr for the correct dose of pred a year ago. You must be exhausted. I have stress from family illness and having to put my mother into care etc since having PMR and each time it has caused a flare or increased symptoms. I have been lucky enough to have a GP who lets me manage my own pred according to my symptoms, but I had to move around the practice to find him.
I agree with the above advice. You will always be wise to consider any advice from Blearyeyed. Whenever I have a problen I find she has been there before me and has an answer.
Wishing you all the strength you need to get through this. Good luck.
Finding the right doctor at the right practice has been so difficult for me. We have so few choices left in our area. I had a great doctor for 25 years, but she went to work for the hospital and doesn’t do private practice anymore due to pressures from managing insurance companies. Since then I have bounced around with doctors who come for a year or two then leave. When this one took on my PMR care, she told me “I’m not a steroid nazi”...exact words. About 6 months ago she said “I’m a steroid nazi”. She’s said more crazy things lately...I know I need a different doctor.
I thought I'd found my perfect dr, she was young and understood PMR, until she stood up and was 8 months pregnant. I haven't seen her since as she moved to a practice nearer her children's school. It's not easy.
My tenosynovitis was part of my PMR at the start and took about 3 or 4 months at 15mg to fade almost entirely. It comes back now and again but less so at higher doses. It is difficult to say whether oral pred will sort it - it certainly won't at the level you are at and even with the higher dose it will take time - and for some places an injection is better, Here it is something I would (and do) discuss with the pain specialist and if I weren't on anticoagulant therapy she would use injections for the hip bursitis. Are you still under the pain clinic? I don't see how any doctor can force you to have a particular treatment - and it is very two faced if you ask me.
I wasn’t aware the pain clinic would do more than spinal injections. That’s very good news and I will be asking them about it. I really hope I can do that. Thanks again PMRpro!
I do think you have access to better health care there. I have appointment with a different pain specialist 3 hours away for another opinion and hopefully better help.
Not sure where you are. I'm in the States and just had an Orthopedic Dr sort out hip pain that wasn't PMR. I had strained a muscle and am now going to physical therapy. Also had bursitis which resolved on its own. With holding pred like that... what a nasty Dr!
She has a very top down sort of attitude, doctors I used to avoid before our area became so impacted by doctor shortage. If the pain clinic can’t help I will ask to go to orthopedics, thanks Bunnymom.
Any medical professional who describes themselves as a “steroid nazi” is not only being unprofessional, but also negligent in your overall care by limiting your medication. Is there a complaint process you can undergo to report this behaviour?
I saw a rheumy for 3 appointments and her behaviour and engagement with me was beyond annoying, it was downright harmful. She denied upping my pred dose when I had a flare following a textbook taper, basically calling me a liar, when she had all the records in front of her on her computer (including my bloodwork results that revealed high CRP and raised ESR). I challenged her superiority when she would say things like “Every patient in this clinic follows the same taper.” To that I would reply, so every person’s PMR activity and remission is identical?? She also made a lot of contradictory statements, and I think she was used to compliant older patients who did what they were told. When she refused to prescribe 1mg tablets for me to taper more slowly, and my blood pressure went up before my visits, I rang and left a message I would not be returning, and why. To my surprise, she called me back and apologized, saying she looked up my file details, and indeed she DID up my pred dose when I flared. Too little, too late.
I went to my GP and shared my experience and he agreed to oversee me AND he prescribed me 1mg tablets and let me control my own taper. He is a wonderful, supportive Dr who has patience, is thorough (bloodwork monthly, annual dexascan and Vit D checks).
My hope for you is that you manage to find a doctor just like mine. In the meantime, I think I’d go to the closest hospital emergency department and explain your situation and hopefully get a repeat prescription for pred in the amount that you need, albeit a temporary solution. Denying vital medication to a patient really gets my back up, and if she was the one with PMR, I’d guess she’d change her tune. How someone can watch their patient suffer is beyond me???
Others have provided you with options that may also work. Stay strong and advocate for yourself. Perhaps bring someone with you to appointments, and take detailed notes, asking her to repeat her harmful, unprofessional comments. It just may make her take pause, as would her reading the contents of a formal complaint.
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